Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

5 Neutral

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. Yes the symptoms are better but not as good as they used to be when I first started the medication 😕
  2. I’m a few years late to this conversation but I am experiencing the same thing! I was diagnosed about 10 years ago. For the first year I would get a typical sore that would blister then scab over. I was on acyclovir episodically but was getting outbreaks frequently so I went on suppressive therapy. At first my Dr put me on acyclovir 200mg 2x a day, which is super low and not even the recommended dose for suppression but for a year it worked. After I had my son he upped the dose to 400mg 2x a day and that worked wonders for 8 years! The ONLY time I would get an outbreak, which now came in the form of a yeast infection almost because I would get internal symptoms) is when I was on birth control and this happened every 3 months for a year. When I stopped taking BC the outbreaks stopped completely. Fast forward to last year, I got a horrible outbreak while on suppressive therapy. I could barely walk. It was all internal, no sores, but redness and swelling. I thought maybe this was a one time thing but no, after that I would get the same awful outbreak every month during ovulation for almost a year. I finally went back to my GYNO and he told me its rare to develop resistance unless you’re immunocompromised. He changed me to valacyclovir 500mg once a day which I thought was too low and that did nothing. Finally in January I went to my PC and she prescribed me 1g of valacyclovir to take daily. I have been pretty much symptom free up until I started getting some discomfort this week (which of course is my ovulation week). I’m so worried this will turn into a massive outbreak. It has completely taken over my life. I don’t know why after all this time almost 11 years that I’m still getting these when I thought your immune system is supposed to suppress the virus and it supposed to become less frequent over time. I think what the doctors tell us it’s a crock of bullshit. I always feel terrible I can barely play with my children or be intimate with my husband. I exercise and eat healthy and take vitamins. It doesn’t make sense. Hope things are better for you now!
  3. Hi all! I’m a female in my 30s from Boston. I’ve had HSV genitally for 11 years and am really having a hard time right now. I would love some local support.
  4. I am so sorry. It’s sad that people are so careless. I contribute getting this to being young and naive and not educated on STDS. I believed the person that I was with and then my life was ruined. This was a time where all of my friends were sleeping around and I didn’t do that. I just got out of an 8year relationship and the next person I was with gave this to me. I don’t even know of it’s type 1 or 2 but it comes out genitally. I’ve asked both my doctors to test the type and they’ve told me it doesn’t matter because the symptoms are the same. But I want to know! It is so completely frustrating! It had been so long for me and I live a healthy lifestyle, exercising 5x a week, eating healthy, taking vitamins AND antivirals and there are days where I STILL am having discomfort. When I look there are no sores. It makes no sense. Last year at my annual check up my GYNO said it is extremely rare to develop resistance to the antivirals BUT this year at my check up he told me you can develop resistance. Well which is it?! I wish EVERYONE with this infection could band together and protest or SOMETHING to wake up these doctors and scientist so they finally take us serious and REALLY start looking for better medication or a vaccine or a cure. This takes such a toll on ones life both mentally and physically. Theres days where I am so sick of dealing with this that I just want to die. It’s becoming too much.
  5. I truly believe when it comes to this virus, the people who have it are way more knowledgeable than the doctors. I feel like they only have information from outdated medical books. And no one cares to do enough research on a vaccine or cure because this virus isn’t deadly however I don’t think that doctors in general realize how much most of us suffer from this. It’s so frustrating! My symptoms have definitely not been typical for the past year until this past January when the infection was so bad that if I used a mirror to look at the inside of my vagina you could see sores. That is when I had enough, after a year of hell despite acyclovir. My PC was better at prescribing the 1g of valacyclovir than my GYNO. I ended up going to the gynecologist back in August because it had been eight months of hell once a month for a week to the point where I could not walk and he switched me to 500mg of valacyclovir when I told him that would not work. I have done my research and that is typically use for people who have nine or if you were outbreaks a year, and already I had one a month for eight months. I tried that for a couple of months and sure enough the week of ovulation I would get the symptoms. Then in October I decided to take two of the 500 mg and that was the only month that I was symptom and outbreak free. So in January I called my primary care and she prescribed 1g of that and things have been a lot better but I’m still super paranoid, I feel like every itch or feeling down there is the start of something and it makes my anxiety spiral out of control. It doesn’t make sense that after all these years the virus would get worse, when all I’ve read is that it supposed to get better. All I can think about is the future and I’m dreading it, growing old and suffering from this, ending up in some sort of a nursing home and hospital because I can’t care for myself and just being in constant pain and discomfort. I would see what the hospital says, maybe get another opinion from a different doctor. Tell them you want to go on the 1g of valacyclovir and fight for yourself as a patient. This thing can be truly debilitating at times. Good luck!
  6. I am somewhat in the same boat as you and terrified to tell my partner. We have been together for...8 years. It’s awful. We are married. We have a son together and are currently looking for buy a home. Idk how I let this spiral for so long but now I feel like I’m in too deep and don’t know how to have the talk. I give you so much credit. The only person I’ve told is my best friend and she doesn’t think that having the virus is any reason to leave someone you love (she also has hsv1 orally so she kind of understands). Theres been so many times where I’ve tried to tell him. We’ve been through so much together and every time I try to get it out something bad is going on and i don’t want to make life worse. I did not get outbreaks for 7yrs on my medication and then all of a sudden they started coming. I changed my meds and it’s helped but each day I’m consumed with guilt. I’ve been suicidal over this because I’m so scared he’ll leave me and know that it’s terrible this secret I’ve been keeping. He’s never shown and signs or symptoms and with the medication and condom use I know his chances of getting this is low. How did you end up having the talk? I can’t handle keeping this in anymore but I’m petrified.
  7. Hi there. I have had this God awful disease for about 11 years now. The first year I would get typical outbreak with a sore that would scab over and heal. This would happen every few months so I decided to go on suppressive therapy, acyclovir 400mg 2x a day. This worked wonders for 8 years and then suddenly stopped working. I would get what felt like a yeast infection every month during the week of ovulation, not a typical outbreak, but worse. The pain and itching internal was so bad I could barely walk during this time. Finally in January I told my doctor I want to change my medication to 1g of valacyclovir daily. It has helped so much better but there are a day or so where I feel a mild itch or pain but it will subside. I would get on that medication and see how you do. I thought the virus is supposed to get better the longer you have it 😒
  8. Hi there. I was on acyclovir 400mg 2x a day for almost 8yrs when it suddenly stopped working. I switched to 1g of valacyclovir in January and have had much better results. Sometimes one medication works better than the other for some people.
  9. Get one 1g of valacyclovir it has helped so much more than acyclovir!
  10. Hi all! I was wondering if anyone is on any type of antidepressant and how it affects your outbreaks (if at all). I suffer from severe anxiety and depression and my Dr. wants me to start taking an antidepressant in addition to my Ativan but I’m worried if I start an antidepressant I will start having outbreaks again. The daily anxiety and panic attacks are becoming a lot to deal with. I’m in a constant state of not being able to breathe. I am currently on 1g of Valacyclovir daily has helped so much and I’m so worried any other medication will set off the virus again. I just ended a 6 day course of prednisone and have been freaking our because it is an immunosuppressant. Any insight would be great.
  11. You can most certainly travel with your medication. I always bring mine with me.
  12. Hi all! I was wondering how many of you have chosen to be on daily suppressive therapy, which medication and dose you are on and how it is working for you. I’ve had the virus (genitally) for about 10 years and was on acyclovir 400mg 2x a day for 8 that all of a sudden stopped working so my doctor switched me to valacyclovir 1g daily two months ago. So far these two months I have not had an outbreak (this past year was hell for me, 1-2 outbreaks a month for a year while on the other medication) thank God and I’m hoping they continue to work. Does anyone feel like one medication works better than the other? Has anyone’s outbreaks gotten worse over the years as opposed to better? Has the nature of your outbreaks changed over the years (I used to get a typical sore someone on my labia but now the outbreaks occur in the form of what feels like a yeast infection inside of me with a lot of pain, swelling, itching and irritation). I also take 2,000mg of Lysine, a probiotic and various vitamins, exercise daily and eat pretty healthy. For those in a relationship where the other person is or was hsv negative, how long were you together before they contracted the virus, or have you still not passed it?
  13. @@gorgeoustechie ugh we have been together for 8 years, married almost 2 and have had 2 children together (i also have a daughter from a previous relationship). Things weren't typical for us when we got together, we just kind of happened even though we weren’t supposed to, there was a lot of trauma early on and difficulties and we never discussed our sexual pasts, there were many times I wanted to tell him and couldn’t get it out, I just didn’t know what to say and got deeper into this “secret”. I never had symptoms or outbreaks and have been on antivirals for years and we use condoms very frequently so it wasn’t like I physically had to hide anything up until now. My therapist and I are working on a plan to tell him because I don’t know where or how to do it. It’s terrible but it is going to be done.
  14. I’ve been reading up on monolaurian and am just concered about something called the jarisch herxheimer effect. Not sure how common that is. I also was told red marine algae helps. What exactly does a neuropath do?
  15. I have been on antivirals for suppression for 8 years. My doctor just switched me from acyclovir 400mg 2x a day to valacyclovir 1g once a day because it seemed like acyclovir wasn’t working like it used to. Does anyone have any insight on if long term use of the antivirals actual make the virus stronger? My doctor said antiviral resistance isn’t common in healthy patients but I’m just not so sure. This past year has been HELL for me with hsv (genitally not sure if its type 1 or 2 and my doctor said testing to see for which type doesnt matter because they present themself in the same way) and I’ve had it for 10 years. I thought over time your body naturally suppresses it better. I’ve heard from a few people monolaurian and red marine algae help but I’m not sure...
  • Create New...